Covid-19 Pandemic: The unseen plight of special-needs children

Rozina Akhter, an 11-year-old child with autism, has stayed confined to her home at Mirpur for the last three months and her mother is still struggling to make her understand why school is closed.

"My school is not closed. You don't want me to go to school and that's why you're lying," she insists.

Hundreds of children in Bangladesh are diagnosed every year with neuro-developmental disorders (NDD) such as autism, Down syndrome, cerebral palsy, and intellectual disability, and amidst the pandemic, the need to stay indoors has hit them hard.

Many of these children's lives are centered around exercise, play, outdoor activities, regular therapy and training. These children, particularly those from impoverished families, have not been able to access their regular life, and that is taking a toll on them and their families alike.

"In April, Rozina hurt herself twice by thumping on the wall and by banging her head against the door. She did that out of anger as she could not go to school and play with her tutor and friends," said Shahana, Rozina's mother.

Shahana took the initiative to arrange online sessions with Rozina's friends with support from their parents, who were also struggling with their children. "Thanks to these online meetups, she has started to cope a lot better."      

Sarder A Razzak, chairman of Down Syndrome Society of Bangladesh, said, "Children with NDD can benefit a lot from online physiotherapy classes and meetups. Through these sessions, they become conscious of the Covid-19 virus, its risks and symptoms. On the other hand, they also get to retain a semblance of their regular lives."

"Children with Down syndrome and intellectual disabilities cope with situations like these better than children with autism, as the latter are more resistant to change in lifestyle. Besides online sessions, caregivers should also arrange play activities at home so that they don't feel a sudden, drastic change in their daily life," added Razzak.  

For children with NDD from impoverished backgrounds, accessing online content is difficult, as is arranging games and exercises at home.

Nilima, another child with Down syndrome, lives with her brother's family in Kamrangirchar.  Due to reduced metabolism rate and poor muscle tone, she has to take regular physiotherapy and check up. She used to get therapy at SEID (Society for Education and Inclusion of the Disabled) Summit Community Therapy School at Kamrangirchar, free of cost. However, Nilima cannot access their services now.

Her sister-in-law Taslima said, "We live in a small house. We don't have enough space to stretch our legs. How can she exercise here?"

Her brother, who was a sales representative, recently lost his job.

"We could not pay rent for two months. The landlord might evict us anytime. We cannot afford medicine and healthy food to Nilima. She is becoming weak in front of our eyes," said Taslima.

The pandemic has also shattered the dream of Sanzid, an autistic youth living in Mohammadpur's Bihari camp, of becoming an earning member of his family.

Sanzid was a student of SEID community therapy school at Mohammdpur, where his talent in music was discovered. He was offered a job of music teacher at the school. However, as the school is closed now, Sanzid's future has become uncertain.

"My father is very ill, but he has to pull a rickshaw to provide for us. I am doing household work, but I wish I could get a job," Sanzid said.

According to SEID, a development organisation for persons with disabilities, NDD is widespread among children in slums and in poor neighbourhoods of Dhaka. In 2019, SEID enlisted 235 children with disorders as beneficiaries in Mohammadpur Bihari Camp and Kamrangirchar.

Karishma Ahmed, a director of SEID, said, "Most of these families live in extremely congested environments. Social distancing, exercising at home, visiting doctors are impossible for them."

Contacted, Dr Gopen Kumer Kundu, deputy director of the autism cell at the health ministry, stressed the need for inclusive education to reduce vulnerability of children with NDD.

"The government has taken steps to establish at least one inclusive school in every division and gradually in every district. This pandemic has proved that we should speed up this project and establish these schools as soon as possible," he said.